Saturday, August 6, 2016

There's a reason they're called melanoma WARRIORS!!!!!!!!!!!!!

Yes, we have the occasional navel watcher.  The one with a hangnail....who starts yelling:  "Oh, my goodness!!  I have some peeling skin at the edge of one finger!!  What does that mean?  Do I have melanoma/side effects/a brain tumor????"  And those, who have been through their own significant difficulties...but were fortunate enough to come out the other side...who when faced with their own misconduct shout, "I have PTSD!!!  What am I to do?" the first I might be inclined to answer...."Perhaps so (to the brain tumor) if you think it seems realistic to focus on a hangnail!"  And to the later..."Quit being an ass!  You're a lucky bug (compared to many)!  Get over yourself!!!"  Yeah, I know....I'm not a very nice or sympathetic person.  Hey!!!  Maybe melanoma made me that way!!!  Nah....It's all just me!!!

However, far more often I am struck by the deep caring nature and incredible strength the folks I've come to know and love with melanoma CONTINUALLY exhibit.  I first wrote about some of these souls in 2012:  Oh, the people you'll meet....  About Patti, 9TS, Alisa, Eric, and other beautiful lives in 2015:  Melanoma kills....the best people  About the amazing Brit, Lori Murdock, later that year:  Merde again!  And most recently, my ode to the dearest, sweetest, bravest man I never met.  Dear sweet Artie.  His 'handle' - arthurjedi007 - on MPIP said it all:  Artie: A beautiful soul, amazing knight

Despite a very rough week (months for others) for some of my amazing melanoma peeps, I have not heard one word of complaint.  Not one whine.  Some shock, some sadness. But mostly, an absolute determination to move forward in the best way they can and LIVE every minute.  Here are a few of their stories...  {A writer's note:  Should the details of the stories that follow have errors in order of findings or treatments...the error is all mine.  However, in my defense, I remind you ~ the stories these peeps share are NOT of their own problems and troubles.  THAT is NOT their piecing together the details of their melanoma journey was a bit of a challenge...even having known them for years.  I think that says a lot right there!!!}

To start the week with a good note...despite what had to be a harrowing build brother-from-another-mother, Stevie...who has been dear to me since 2011....began his melanoma journey in 1994 with a cutaneous primary.  He developed a lung nodule, removed surgically, in 2011...joining me and others as Stage IV, yet NED, before the FDA approval of BRAFi, ipi, or anti-PD1.  He ended up doing IL2 that same year, with additional surgery to a nodule in his trachea. Five or so brain mets were zapped in 2014 and he began BRAF/MEK with a good response.  Three more brain mets zapped in 2015 and side effects to his BRAFi combo led to a break, a modified dosing schedule, and eventual basic stability of all bits and bobs with a switch to TAF/MEK.  In the months leading up to July he had been watching scans that were showing slow "growth" at the site of a previously zapped brain met and was making plans for a craniotomy to deal with the spot if scans continued to show growth.  Luckily, they did not.  Scans remained the process continues and he joins Dick K as an example of long term survivorship on BRAFi.  But all of not the important stuff.  The important stuff is that he is an amazing guy.  A great husband and dad, whose eldest is heading out to college this month, and two other young teens will be heading back to school very soon.  He is always supportive.  Gets me and makes me smile.  Puts up with my bossy attitude.  An awesome man.  A beautiful friend.

There's Bennie.  A big guy, with an even bigger smile from Texas.  Great dad of two young kids....just started building a house after completing an arm of my trial...Stage IV, NED, nivo/ipi.  Bennie was diagnosed with melanoma in 2005, but became Stage IV in 2013 with mets to lungs, liver, and hip.  After some surgery and IL2 and later, Zelboraf, became NED that September and was even able to go off meds as they were causing pretty miserable side effects.  But, in December of 2013 a brain met showed up on scans and had to be zapped.  Around that time, he and his wife found Moffitt and Weber.  Testing leading up to his trial participation was incredibly stressful as he had to be NED in order to qualify for the ipi/nivo combo offered.  They made it!!!!  I have never seen a pic of Bennie with anything less than a big smile on his face.  Yet, I know how difficult these past years must have been.  He had small children.  He had to take IPI AND nivo.  And he traveled to Tampa for 2 YEARS from his home in Texas...finishing his trial...still NED, in May of 2016.  However, this week, he got the results of his 3 month post trial scans.  Another brain met.  He is making plans for zappage and figuring out what to do next.

There is the ever beautiful, grace and humor filled, QUEEN of melanoma - Dear Reverend Carol Taylor.  She dealt with a cutaneous melanoma and positive nodes in 2008.  Removal of same left her with lymphedema for which she wore tattoo printed compression sleeves that got her some looks back in the day before everybody was tatted up, attention she parleyed into great teaching, sharing, and learning experiences.  She has spent years being the most amazing voice of advocacy.  Her posts from 2010 to 2015 on her letsgivethanks - an Attitude of Gratitude blog, along with her Melanoma Prayer Center, gave folks just what they needed from deep love and encouragement to a bit of a kick in the pants as required. After all those years as Stage 3b, in September of 2015, she progressed to Stage IV with mets to lungs, brain and sacrum.  After surgery to one brain met and radiation to the other three along with her spinal met, she started the ipi/nivo combo...whose side effects landed her in the hospital...twice.  With that option shot,  she started Zelboraf and was doing pretty well.  This June, scans revealed the development of a blood clot in the brain.  She has exited ever gracefully, stage left, from her position as reverend and her blog....yet her posts from her beautiful heart...remain there to inspire us all.

I am contacted by several new peeps a week with questions about treatment and melanoma.  When I am....I try to look at this blog with fresh eyes....wondering what it is folks see. I've told B and others that I mostly appear to be a crazy person.  I can see where there is some good info for folks...but I would walk away thinking..."That woman is nutters!!!"  B (and others) when told of my conclusion, had a moment where he looked as though he might argue...but...changed his mind!!!  I understand that.  We are honest with each other.  However, there are those in melanoma land who AREN'T nutters!  They are always calm, and wise, and measured in their outlook and response to others!!!!  Brian P is THAT guy.  Another man in the prime of life, with two young kids, has been working toward his goal of resuming his career as a pilot and buying a home ~ activities sidetracked by melanoma.  He was Stage 2 in 2006.  Drew the short straw and did interferon in an ipi vs interferon trial in 2011.  Mets to his intestine led to surgery in 2013.  Positive nodes in the abdomen led to participation in a sequential anti-PD1/ipi trial in 2013.  He had been stable for 2 years, 1 year off treatment, when just this week....routine scans showed positive nodes. Surprise, disappointment....certainly.  But, mostly...Brian just plows forward...seeking info from Dr. Weber (who actually provided some hopeful news, in that perhaps Brian may be dealing with an immunotherapy ditzel...along with a diatribe on the ineptitude of radiologists...been there, heard well as some reasonable treatment options should they be needed) to determine what to do next.

And there's my sweet, dear Joshie!!!  ANOTHER young guy with a couple of kids and a great family.  He's honest and real...and sick and tired at times...just like the rest of us.  But, with a fighting spirit and voice of kindness to others of which there is no like. Initially diagnosed in 2011 with some recurrences at the original site....a scan in 2013 showed lung mets.  Ipi followed by IL2 was completed.  He remained NED until 2015 when progression occurred in his lung, liver and pancreas.  He attacked with ipi and surgery.  In between he had blood cells harvested for a cutting edge TIL's procedure followed by IL2 and ipi that he will be starting soon.  He admits to worry and confusion and desperation.  But shows us all how to move forward - in spite of EVERYTHING!

While by no means a comprehensive list, these are dear ones who have inspired me and touched my soul.  They are some of the best people this world has to offer.  The fact that they also have melanoma is just a 'BLECH!' on their day and of course, a great concern to those who love them. I want each of them to know how much their example means to me and many others.  I wish each of you ~ hope and peace and love....along with a treatment that kicks melanoma to the curb.  WARRIORS, indeed.  - love, c


  1. I doff my hat to all of you warriors!

  2. Celeste-

    I'm touched by this...means a lot. I'm not sure you realize how much you mean to so many of us...what you do; the love, support & encouragement. I know it helps keep me going. Love you!!